OBJECTIVE: This study captured the end-of-life care experiences across various settings from bereaved caregivers of individuals who died in residential hospice.
METHODS: A retrospective, observational design using the CaregiverVoice survey with bereaved caregivers of patients in 22 hospices in Ontario, Canada. The survey assessed various dimensions of the patient's care experiences across multiple care settings in the last 3 months of life.
RESULTS: A total of 1153 caregivers responded to the survey (44% response rate). In addition to hospice care, caregivers reported that 74% of patients received home care, 61% had a hospitalization, 42% received care at a cancer center, and 10% lived in a nursing home. Most caregivers (84%-89%) rated the addressing of each support domain (relief of physical pain, relief of other symptoms, spiritual support, and emotional support) by hospice as either "excellent" or "very good." These proportions were less favorable for home care (40%-47%), cancer center (46%-54%), and hospital (37%-48%). Significantly, better experiences were reported for the last week of life where hospice was considered the main setting of care, opposed to other settings ( P < .0001 across domains). Overall, across settings pain management tended to be the highest-rated domain and spiritual support the lowest.
CONCLUSION: This is one of few quantitative examinations of the care experience of patients who accessed multiple care settings in the last months of life and died in a specialized setting such as residential hospice. These findings emphasize the importance of replicating the hospice approach in institutional and home settings, including greater attention to emotional and spiritual dimensions of care.
BACKGROUND: As palliative care increasingly takes place in patients' homes, perceptions of security among patients in the late palliative phase and their relatives are important.
AIM: To describe and compare patient-relative dyads regarding their perceptions of security in palliative homecare, including the perceived security of the actual care given to the patients, as well as the subjective importance of that care.
METHODS: A cross sectional questionnaire study including 32 patient-relative dyads was conducted in an urban municipality in Norway. Patients were in a late palliative phase and received palliative homecare. Each patient proposed one relative. Data were collected using a modified version of the Quality from the Patients' Perspective instrument (QPP), which focuses on security and comprises three dimensions: medical-technical competence, identity-orientation approach and physical-technical conditions. Context-specific scales containing four aspects (competence, continuity, coordination/cooperation, availability) were added. The instrument contains two response scales; perceived reality (PR) and subjective importance (SI). Data were analysed by descriptive statistics, Chi-squared test, T-test and Wilcoxon's signed rank test.
RESULTS: Patients had high mean scores on the PR-scale for the sense of security in palliative homecare in the dimensions of medical-technical competence and physical-technical conditions. There were three low mean scores on the PR-scale: the aspect of continuity from patients and the aspects of continuity and coordination/cooperation from relatives. The patients scored the SI scale statistically significantly higher than the PR scale in the identity-orientation approach dimension and in the aspect of continuity, while relatives did so in all dimensions and aspects. The intra-dyadic patient-relative comparisons show statistically significant lower scores from relatives on the PR-scale in the dimensions of medical-technical competence, physical-technical conditions, identity-orientation approach and the aspect coordination/cooperation.
CONCLUSIONS: There are several statistically significant differences between patients and relatives' perceptions of security in the palliative homecare received (PR) compared with the subjective importance of the care (SI) and statistically significant differences in the patient-relative dyads in PR. A relatively mutual sense of security in palliative homecare is important for patient-relative dyads, as relatives often provide care and act as patients' spokespersons. What they assess as important can guide the development of palliative homecare.
Objectif: Étudier la relation entre la détresse et la confusion mentale chez les patients en situation palliative afin d’apporter une prise en charge adaptée à cette situation complexe et fréquente en fin de vie.
Méthodes: C’est une étude quantitative observationnelle, prospective et multicentrique réalisée auprès de patient en situation palliative. Les équipes de chaque structure incluaient les patients et réalisaient des évaluations à l’aide d’un formulaire visant à renseigner l’intensité de la détresse ressenti par le patient, à l’aide de la Distress Thermometer auto-évaluée puis hétéro-évaluée, et la présence ou non d’une confusion à l’aide de la Nu-DESC. En outre, il était rapporté la prise ou non des prescriptions médicamenteuses anticipées ainsi que toutes les caractéristiques épidémiologiques du patient.
Résultats: Nous avons pu inclure 51 patients et réaliser 467 entretiens. Aucune relation n’a été mise en évidence entre la détresse et la confusion sur tous les entretiens confondus. Par contre, une relation faible à modérée a été mise en évidence au premier entretien. La confusion a tendance à augmenter à l’approche du décès alors qu’aucune relation n’a pu être mise en évidence entre la détresse et la date du décès.
Conclusion: Ces résultats questionnent sur le ressenti des patients confus puisqu’il n’a pas été mis en évidence que la confusion engendre une détresse plus importante chez ces patients sur tous les entretiens.
Cet atlas présente les ressources pays par pays en matière de soins palliatifs : services pour adultes ou enfants, lits dédiés, composition et nombre d'équipes, tendance et objectifs des politiques nationales de santé des pays.
BACKGROUND AND AIM: Healthcare professionals working in palliative care are exposed to emotionally intense conditions. Scientific literature suggests Expressive Writing as a valid tool for the adjustment to traumatic events. For health workers, EW represents an important support to prevent Compassion Fatigue and Burnout. As literature showed that Compassion Satisfaction, Group Cohesion and the Organizational Commitment are protective factors able to counter the onset of Compassion Fatigue and Burnout, the aim of this study is evaluating the effect of Expressive Writing protocol in Palliative Care workers on Compassion Satisfaction, Group Cohesion and Organizational Commitment.
METHODS: A quasi-experimental quantitative 2x2 prospective study was conducted with two groups and two measurements. 66 professionals were included. Outcome variables were measured using: Organizational Commitment Questionnaire, Compassion Satisfaction Rating Scale, ICONAS Questionnaire, Questionnaire for the evaluation of EW sessions.
RESULTS: The parametric analysis through Student t test did not show statistical significance within the experimental group and between the experimental and control groups. One significant difference in the pre-intervention assessment of Normative Commitment t (gl 64) = -2.008 for p< 0.05, higher in the control group, disappeared in the post intervention evaluation. An improvement trend in all variables within and between groups was present, with a positive assessment of utility from the participants.
CONCLUSIONS: This intervention did not significantly impact outcome variables. It is however conceivable that by modifying the intervention methodology, it could prove effective. The positive evaluation by the operators, suggests to keep trying modelling a protocol tailored on Palliative Care professionals.
BACKGROUND: The distress of patients suffering from a terminal illness can lead to a state of despair and requests for euthanasia and assisted suicide. It is a major challenge for palliative care workers. The Distress Thermometer (DT) is recommended by the National Comprehensive Cancer Network as a means of more easily assessing distress. It is available as a Self-assessment reported Distress Thermometer, but for a wider use in palliative care it should also be implemented in the form of a clinician-reported outcome (clinRO). Clinicians need to rate patient's distress when the patient is not able to do so (subject that cannot be addressed, defensive patient…). The primary aim of the quantitative study was to assess the validity of the Clinician-Rated Distress Thermometer in palliative care.
METHOD: The assessments were performed by teams working in three palliative care centres. The primary endpoint was concordance between the patient and clinicians’ responses via Lin’s concordance coefficient. Eligible patients were aged 18 years or older, suffering from a severe disease in the palliative phase, and with a sufficient level of awareness to consent to participate in the study. A total of 51 patients were recruited, 55% were male, with a mean age of 65.8 years [39–90 years].
RESULTS: Three hundred sixty-four clinician-Rated Distress Thermometer and 467 Self-Reported Distress Thermometer were performed. Only 364 of the 467 Self-Reported Distress Thermometer were used for the study, as investigators did not systematically ask the patient to give an account of his distress. Concordance between patient and clinician responses: The Lin's concordance coefficient with a threshold (alpha) of 5% was 0.46 [0.38; 0.54]. At the first assessment, it was 0.61 [0.44; 0.79]. The Cohen's kappa coefficient was 0.52, with a concordance rate of 79.6%. The sensitivity was 82.9% [66.4-93.4] and the specificity 71.4% [41.9-91.6].
CONCLUSION: The first assessment gave the best results in terms of concordance between Clinician-Rated DT and Self-Reported DT. In the next assessments, the Clinician-Rated DT were less consistent with the patients' Self-Reported DT.
As the national demand for donated organs continues to rise, the rate of registered donors within the United States has remained stagnant, creating a shortage of viable, transferrable organs. Lack of registered donors can be partially attributed to misconceptions about organ donation, which has led to a population less willing to register as organ donors. The utilization of educational interventions can begin to address common misconceptions and change attitudes to favor organ donation. A quantitative pretest, posttest survey design was utilized in order to assess effectiveness of an educational intervention within the college-aged population. Results suggest that educational interventions are effective in creating positive attitudes about organ donation in college-aged students.
BACKGROUND: The need for palliative care in the intensive care unit is increasing. Whether gaps and variations in palliative care education and use are associated with moral distress among critical care nurses is unknown.
OBJECTIVES: To examine critical care nurses' perceived knowledge of palliative care, their recent experiences of moral distress, and possible relationships between these variables.
METHODS: In this quantitative, descriptive study, survey questionnaires were distributed to 517 critical care nurses across 7 intensive care units at an academic health center in Virginia. Validated instruments were used to measure participants' perceptions of palliative care in their practice setting and their recent experiences of moral distress.
RESULTS: A total of 167 completed questionnaires were analyzed. Fewer than 40% of respondents reported being highly competent in any palliative care domain. Most respondents had little palliative care education, with 38% reporting none in the past 2 years. Most respondents reported moral distress during the study period, and moral distress levels differed significantly on the basis of perceived use of palliative care (P = .03). Respondents who perceived less frequent use of palliative care tended to experience higher levels of moral distress.
CONCLUSIONS: Many critical care nurses do not feel prepared to provide palliative care. When palliative care access is perceived as inadequate, nurses may be more apt to experience moral distress. Health system leaders should prioritize palliative care training for critical care nurses and their colleagues and empower them to reduce barriers to palliative care.
AIM: Professional supervision (PS), a collaborative relationship that promotes reflection on contextualised work-related issues for the benefit of ongoing learning and development and improved professional practice, is not well understood in the medical context. This study aimed to explore the attitudes and experiences of PS among doctors working in palliative care in New Zealand.
METHOD: Eighty members of the Australia New Zealand Society of Palliative Medicine (ANZSPM) participated in a cross-sectional quantitative survey.
RESULTS: Overall, PS was felt to be important, particularly by those currently participating in PS, for enhancing clinical functioning and supporting doctors' wellbeing. Barriers to undertaking PS included finding a supervisor, lack of funding and time, with the most significant factor being whether the workplace supported PS. Supervisees' responses showed PS to be a safe experience, addressing a wide range of issues, with a positive effect on personal coping.
CONCLUSION: Despite identified barriers, New Zealand-based palliative care doctors reported PS to be important and beneficial both personally and professionally. Further consideration should include the impact of professional and organisational culture on uptake of PS, future research and acknowledgment that palliative medicine may be in a position to highlight the benefits of PS for the wider medical community.
Besides seeking social support, connecting with bereaved others, and maintaining relationships with the deceased, bereaved Facebook users may express their grief on Facebook to reduce their death anxiety. Notably, research has not yet explored the psychological outcomes of expressing grief on Facebook. This study undertook quantitative analysis of survey data from an initial community sample of 409 bereaved Facebook users (77.8% survey completion rate, n = 312; Mage = 34.46, SD = 12.38; 90% women) to ascertain whether expressions of grief on Facebook had negative psychological outcomes, and whether terror management theory (TMT) provided an appropriate lens for understanding Facebook grief expressions (FBGE). The aims of this study were three-fold: to clarify rates at which Facebook profiles of deceased users are deactivated, memorialized, unchanged, or managed; frequency and types of FBGE; and prevalence of/visitation to commemorative groups. Results—though insufficient to support TMT as an explanatory theoretical framework for FBGE—indicated that individuals who participated in FBGE reported higher anxiety and stress compared to bereaved individuals who did not express their grief on Facebook. Results provide a useful starting point for future research regarding online grieving behaviors and psychological wellbeing.
BACKGROUND: Research shows that religion and spirituality are important when persons cope with serious and life-threatening illness. Patients who receive good spiritual care report greater quality of life and better coping, and such support is strongly associated with greater well-being, hope, optimism, and reduction of despair at end of life. Despite these benefits, evidence shows that many patients and caregivers (P/C) refuse spiritual care when a hospice team offers it, possibly resulting in unnecessary suffering.
OBJECTIVE: To better understand what contributes to spiritual support acceptance in hospice care.
DESIGN: Quasi-experimental quantitative study.
SETTING/SUBJECTS: 200 patients admitted to hospice.
MEASUREMENTS: Participants were divided equally into intervention and control arms. Control participants received standard information about the availability of chaplain support and an offer for referral to chaplain services. Intervention participants received educational intervention that explained hospice chaplain services and the evidence-based benefits of spiritual support. The association of chaplain acceptance was measured with treatment group, patient age, disease, church affiliation and support, sex, bereavement risk, and place of residence.
RESULTS: Among intervention participants, 64 (64%) accepted spiritual support versus 52 (52%) of control participants. The intervention arm's acceptance rate was higher than the control arm after adjustment for other variables. The variables associated with acceptance were age, primary diagnosis, and place of residence.
CONCLUSIONS: This research suggests that educational intervention that explains spiritual care in hospice and its benefits contributes importantly to greater acceptance and allows P/C to gain the benefits of spiritual support during end-of-life care.
Aim: To examine factors that influence the health of older widows and widowers. The review question was: What is the evidence of the relationship between widowhood and health in older adults?
Design: Systematic review.
Data sources: Academic Search Elite, CINAHL, Medline (Ovid) and PubMed were searched for articles published between January 2013-December 2017.
Review methods: A systematic review of quantitative research with a qualitative thematic analysis.
Results: The selection process resulted in 12 studies. One of the themes that emerged was: emotional challenges related to experiences of bereavement, depression and anxiety, which was based on the sub-theme social support as the main strategy for coping with emotional pain and suffering. The second theme was: struggling with poor physical health. The findings indicate that healthcare professionals need knowledge and skills to deal with the health consequences of widowhood in old age. Building community teams can prevent emotional and physical health problems, as well as reduce mortality.
BACKGROUND: The right of euthanasia is the subject of worldwide discussion today, as it is one of the most controversial medical, religious, political, or ethical issues. This study aims to survey the attitudes of Orthodox parishioners toward the euthanasia. Methods: Within the quantitative study, the survey was conducted through a semistructured questionnaire. Respondents were the parishioners of the Orthodox Church. Within the qualitative study, the survey of the experts of the Orthodox Church, in particular the clergy, was conducted. During the survey of the experts, we used the snowball method.
RESULTS: The majority of respondents (81%) were aware of euthanasia. The dominant opinion is that euthanasia is " the consent to life termination during the illness, when there is no way out and recovery is impossible" or " a terminally ill person voluntarily decides to end life painlessly." Those who disagree with euthanasia rely on the religious factors (why the church prohibits it). Those who agree with euthanasia action argue the legitimate human rights and free will of person. Most of the respondents (86%) have not heard about euthanasia practices in Georgia. Most of the respondents (71%) knew that the Orthodox Church prohibits euthanasia; 39% of the respondents believe that euthanasia is justified in medical terms.
CONCLUSION: It is advisable to raise public awareness on euthanasia in religious, medical, cultural, social, and legal aspects.
OBJECTIVE: To investigate views, determinants and barriers to end-of-life discussions for doctors, nurses and members of the public (MoP) and their acceptability of risk prediction tools.
METHODS: Concurrent surveys of 360 doctors and nurses and 497 MoP.
RESULTS: Sixty per cent of clinicians reported high confidence in initiating end-of-life discussions, and 55.8% regularly engaged in them. Barriers to end-of-life communication reported by clinicians were uncertainty on the likely time to death (44.7%) and family requests to withhold information from patients (44.2%). By contrast, most (92.8%) MoP wanted information about life expectancy; 89.9% wanted involvement in treatment decisions if the likelihood of death was high; and 23.8% already had an advance care directive.
CONCLUSIONS: A dissonance exists between doctor/nurses perception of older peoples' preference for receiving prognostic information and the public desire for involvement in decision-making at the end of life. As public attitudes change, strategies for greater involvement of patients in shared end-of-life planning are warranted.
BACKGROUND: Although the need for palliative care is gaining recognition in Southeast Asia, knowledge about how decisions are made for children near the end of life remains sparse.
OBJECTIVE: To explore pediatric intensivists' attitudes and practices surrounding end-of-life care in Vietnam.
METHODS: This is a mixed-methods study conducted at a tertiary pediatric and neonatal intensive care unit in Hanoi. Physicians and nurses completed a quantitative survey about their views on end-of-life care. A subset of these providers participated in semistructured interviews on related topics. Analysis of surveys and interviews were conducted. Results were triangulated.
RESULTS: Sixty-eight providers (33 physicians and 35 nurses) completed the quantitative survey, and 18 participated in interviews. Qualitative data revealed three overarching themes with numerous subthemes and supporting quotations. The first theme was factors influencing providers' decision-making process to escalate or withdraw treatment. Quantitative data showed that 40% of providers valued the family's ability to pay to continue life-sustaining treatment. Second, communication dynamics in decision making were highlighted; 72% of providers would be willing to override a family's wishes to withdraw life-sustaining treatment. Third, provider perceptions of death varied, with 68% regarding their patients' deaths as a personal failure.
CONCLUSIONS: We elicited and documented how pediatric intensivists in Vietnam currently think about and provide end-of-life care. These findings indicate a need to strengthen palliative care training, increase family involvement in decision making, implement standardized and official do-not-resuscitate documentation, and expand pediatric hospice services at the individual, hospital, and national levels in Vietnam.
Despite their growing incidence over the last decades, national days of mourning received curiously sparse attention throughout social sciences and death studies. This study investigates the 327 national mournings observed across European countries between 1989 and 2017 in terms of their national variance, temporal dynamics, typology of events that led to their declaration, and victimology. Drawing on a Durkheimian-inspired conceptualization of national mournings as political rites of solidarity and reconciliation, this article finds empirical support for the thesis that the frequency with which European countries declare national mourning is a negative function of a society’s level of social integration.
There is a gap in the research literature regarding advance care planning with this population of patients. This article reports on a study about the end-of-life knowledge, needs, and preferences of patients on hemodialysis - as reported by patients - within a hospital or community-based setting that addresses this gap. Data were collected using a survey method; non-probability, consecutive sampling (n=133) resulted in a high response rate of 64.0%. There were three key findings: 1) patients do not identify themselves as having a progressive health condition, 2) patients are comfortable discussing end-of-life issues, and 3) patients want discussions about end-of-life care when they request to do so or when their health worsens. We report on these findings and discuss three key recommendations: 1) patients with chronic kidney disease be consulted about the appropriate time for advance care planning, 2) symptom management needs greater attention, and 3) the role of family requires more consideration.
CONTEXT: Racial disparities in rates of hospice use, a marker of quality of end-of-life (EOL) care, have been a long-standing problem. Although distrust has been cited as a main reason for the preference of intensive EOL care among African Americans, the role of trust has not been closely analyzed in predicting EOL care in the context of advance care planning (ACP) outcomes.
OBJECTIVES: The goal of this review was to empirically examine the role of trust in ACP outcomes.
METHODS: For this systematic review, we utilized methods adapted from the GRADE process developed by the Cochrane Collaboration. The research question guiding this review was "What is the quantitative influence of trust in the health care system or health care providers on the ACP process for African Americans?" We searched Medline, Embase, and Web of Science for articles published between 1975 and 2016.
RESULTS: We identified nine quantitative studies that measured and evaluated trust as a predictor or correlate of ACP preferences. Of the studies, eight were observational and one was a pre-post-test study. Three studies were designated as low quality, and six studies were of moderate quality.
CONCLUSION: Distrust has been cited as a central reason for African Americans' tendency to choose life-sustaining treatments over comfort-focused care; however, our findings do not support this hypothesis. The majority of studies found no significant differences in trust between African Americans and their White counterparts. Further, we found that trust was not associated with ACP outcomes in the majority of studies.
BACKGROUND: No study has compared the effects of hemodialysis on the symptom burden of terminally ill and nonterminally ill end-stage renal disease (ESRD) patients.
OBJECTIVES: This study aimed to examine the effects of hemodialysis on the symptom burden of ESRD patients and compare the terminally ill and nonterminally ill groups.
DESIGN: This was a quantitative survey; for patients on hemodialysis, the survey was conducted at the beginning and end of the weekly cycle of hemodialysis sessions.
SETTING/SUBJECTS: A total of 211 ESRD patients were recruited in Taiwan, 47 of which were terminally ill (38 on hemodialysis) and 164 nonterminally ill (110 on hemodialysis).
MEASUREMENTS: Symptom burden was assessed using the Taiwanese version of the MD Anderson Symptom Inventory for kidney disease.
RESULTS: Being terminally ill predicted higher symptom severity (B = 0.604, p = 0.017), whereas hemodialysis predicted lower symptom severity (B = -0.614, p = 0.014) in ESRD patients. Nonterminally ill patients who were married or on hemodialysis experienced lower symptom severity (B = -0.604, p = 0.013 and B = -0.665, p = 0.017, respectively). Among terminally ill patients, neither hemodialysis nor other background characteristics predicted symptom severity. When hemodialysis was initiated, no change in symptom severity was observed in terminally ill and nonterminally ill patients.
CONCLUSIONS: The effects of hemodialysis on symptom burden were different between ESRD patients with different disease states. Hemodialysis predicted lower symptom severity only in nonterminally ill ESRD patients. Apart from dialysis, care providers should revisit the palliative approach for treating terminally ill ESRD patients to improve their quality of life.
The results of research on selected drugs used in palliative care are presented, including fentanyl, tramadol, metoclopramide, hyoscine butylbromide, midazolam, haloperidol, levomepromazine and clonazepam. Interpretation of their ESI mass spectra obtained by the use of a triple quadrupole linear ion trap mass spectrometer is given. As a result, fragmentation pathways described in the literature are complemented and presented with more details. On their basis, transitions for quantitative analysis are selected and chromatographic conditions for the determination of the palliative care drugs are proposed as well. These results enable future studies on palliative care drugs in elderly patients including both their quantitation in body fluids and easier identification of their metabolites.